Crush

I'm in love with a little boy. I hang on his every word. I understand him better than anyone else does and I can't wait to hear what he will say next. Sometimes he asks me to play "Rock a My Baby" which means I rock him like a baby and sing the song. I love holding him close and remembering the little baby I used to rock. Sometimes he says, "Hold you Mommy" which means he wants me to hold him and I am all too happy to oblige. Sometimes he just wants to sit by me on the couch and watch one of his favorite shows like Sesame Street or Cars. He snuggles up to me with his blanket and his stuffed Lightning McQueen and I ask him if he is cozy. He tells me he is and sometimes shares his blanket with me. Then I ask him for a kiss on my cheek which he dutifully gives. Then my heart melts and I think this snuggly couch moment is one of the best in the whole world. So you see, I really am in love with my little boy.

Autism Treatment Coverage

I received this email today and thought it explained very clearly the benefits of coverage of autism treatments by insurance companies. For those of you in New York state, treating children with autism as soon as possible will save money in the long run and help them grow up to lead productive lives. This is definitely a win-win situation.

The Albany Chapter of the Autism Society of America is proud to announce their endorsement of Senate Bill 6123 and Assembly Bill 688.


Schenectady, NY (November 9, 2009) The Albany Chapter of the Autism Society of America (ASA) proudly endorses Senate Bill 6123 (S6123) and Assembly Bill 688 (A688) since this legislation offers clear and practical solutions that will enable New York families to have equal access to appropriate treatments and services that would be covered by private health insurance if it were not for the diagnosis of an autism spectrum disorder (ASD.) These bills ask insurers to simply update their coverage to reflect the widely held belief in the scientific community that autism is treatable.

The ASA estimates lifetime cost of care for an individual with autism at $3.5 to $4 million; with access to early diagnosis and intervention, these costs can be reduced by two-thirds. Many families cannot afford to give their children the treatments that could help affected individuals reach their fullest potential and enjoy a happy and productive life. ASD results in annual societal costs of $35 billion per year.

Persons with ASD typically require a combination of medical, psychological, psychiatric, physical therapy, occupational therapy, speech therapy, behavioral therapies and other developmentally-based interventions.

Reasons to Support Private Health Insurance Coverage for ASD
ASD is now the number one childhood developmental disability with 1 of every 100 children in the US being diagnosed, making the diagnoses more common than all types of pediatric cancer, AIDS, and diabetes combined. S6123, introduced by Senator Shirley Huntley, and A688, supported by Assembly Member David Koons, would reduce the financial burden on New York families. Families incur significant financial burdens to pay for necessary and appropriate services, sometimes as much as $100,000 a year. In addition to the crushing financial burden placed on families affected by autism, the time, energy, stress and emotional commitment can become absolutely overwhelming and, if left unchecked, can adversely impact employment, health and the marriage. Studies done indicate adding coverage would increase policy premium costs less than 1%. The benefit to New York taxpayers, families and the school system is clear—spend a little now or, spend a lot later. Currently, fifteen other states specifically require insurers to provide coverage for the treatment of autism, thirty-four others have reform measures pending.

Without treatment, the taxpayers of New York will certainly bear the enormous financial burden of a life-time of care for children who live a normal life span and often need round the clock care. In contrast, many children who receive effective, intensive and evidenced-based treatments require less support in school and go on to lead productive lives as taxpayers.

For more information on the ASA’s endorsement please contact Janine Kruiswijk, Executive Director (518) 355-2191 or at jlounsbery@albanyautism.org

About Autism
Autism is a complex brain disorder that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by extreme behavioral challenges. Autism spectrum disorders are diagnosed in one in 100 children in the United States, affecting four times as many boys as girls. The prevalence of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

About The Autism Society of America - Albany Chapter
The Autism Society of America - Albany Chapter serves people living with Autism in the greater Capital District (12 counties) and their families. Our mission is to promote lifelong access and opportunities for people on the autism spectrum and their families so they can be fully participating, included members of their communities. We do this through advocacy, public awareness, education, compassionate support and research related to autism. Our primary focus is on public awareness, education and compassionate support. To learn more about Autism and the Autism Society of America – Albany Chapter visit www.albanyautism.org

SEIT

I want to use this blog to explain some of the great services Josh receives. We receive amazing services in New York State and it has had a huge impact on Josh and our family. We feel so blessed by the miracles Josh's teachers have done and the kindness with which they have done them.

One of the kinds of teachers Josh has is a SEIT teacher. SEIT stands for Special Education Itinerant Teacher. She comes to our house every weekday morning and works with Josh for one hour. She can also do the appointment just about anywhere else. That's the "itinerant" part. Starting in the Fall, Josh's teacher is going to start coming for two hours a day. We plan to do more activities in the community so Josh can learn to interact in social settings and with his peers. Socialization is one of the three key areas with which children with autism struggle. Josh's SEIT teacher works closely with Josh's teachers at the school and a binder goes back and forth to school with him each day with notes on his progress at certain tasks. We are so grateful for Josh's SEIT teacher. We've had several people come into our home to help Josh and every one of them has been wonderful. They've come to be good friends. They love what they are doing and they love the children they work with. They bless the lives of children and families every single day. We would be lost without all of their help, or at least a lot more tired and stressed out.

So here is my soapbox. A lot of kids with autism or other special needs aren't getting the services the need. New York state has very good programs but many other states do not. Cost is the reason most often cited for underfunding these programs. However, there are studies that show that "an early diagnosis followed by proper early intervention can reduce the lifespan costs for treating, servicing and supporting a person with autism by two-thirds."* These lifespan costs are estimated to be 3.2-3.5 million.* If states don't want to help special needs children simply because it is right, then they should do it for savings they could be pocketing. I love it when the moral good and the economic good are the same thing! It makes it easier for people to do the right thing.

*Information taken from The Autism Advocate, Second Edition 2009, Volume 55, No. 2, pg. 4

New Favorite Words

"Want Mommy hold you." or "Mommy hold you please?" This is what Josh says to me when he wants to be held or cuddled. He comes over to me with his thumb in his mouth and his blanket under his arm. This is one smart kid. He has basically discovered the one phrase to which I simply cannot say "no." I love snuggling my kids. I love their sweet baby smells and their soft baby skin. I love that they are quiet and still and that at that moment they need only me. When both kids want me to hold them, well, that is one of the closest things to heaven I know. One day Josh is going to be a big "tough guy" and too much affection from his mother will probably be embarrassing. But for now, every once in awhile, he wants his mommy and he has the ability to express his needs clearly to me. This is a great gift and I am going to try to savor every minute.

Senate Bill 819 - Autism Treatment Acceleration Act of 2009 (ATAA)

All

A group of US Representatives and Senates have introduced a bill to help people with autism. Here is a link to Autism Society of America site where you can read more about the bill as well as send a message to your Representative and Senators.

The Autism Society of America also allows you add your own message to include with your message. I added the following:

As I am sure you know there has been an increase in the case of diagnosed autism and early intervention is critical in improving every autistic child's life.

This last year my son, Joshua, was diagnosed with autism and the impact on my family has been difficult at times. However, the early invention services provided has been an enormous support. Joshua is now able to call my wife and I "mama" and "daddy" which as you know is the happiest words to hear from your child.

I recognize the strains on the current and future federal budgets, and understand the difficult choices you have to make. I also voted for you based on your service to the community, the sacrifice you make in representing us, and your ability to recognize the importance providing the best future for our children. During your deliberations I ask you to think about the improvement that special education services has for autistic and special needs children and defend the budget with your colleagues.

Thank you for you time, and if can be of any service to you please let me know.

I hope that each of you will take the time to be involved in our government and future for all of our children.

Crying from Basketball

As many of you know I am a fairly big sports fan. Megan teases me that the only time I cry is when there is some emotional moment during a sporting event; think Eric "The Eel" Moussambani from Equatorial Guinea finishing last in the 100m freestyle swim, Britain's Derek Redmond tearing his hamstring during the 400m being disqualified because his Dad helped him across the finish line, the Jamaican bobsled team carrying their sled over the finish line after the track cable broke. Needless to say I could go on with examples, these are only Olympic examples off the top of my head. However, I would like to share a couple of videos about Jason McElwain, or J Mac.

The first if from ESPN:

A similar piece aired during the NBA Finals:

J Mac also appears in this Gatorade video with the likes of Michael Jordan, Payton Manning, Mia Hamm, and other sports greats:

Based on my love of sports, in particular team sports, and my weakness for tears during emotional sports moments this obviously touched me. I see Josh's determination and it teaches me to do my best, as J Mac says "The sky is the limit, give it all the effort that you can, catch a dream, and never give up." I know I need to be my best, so that Josh will want to be his best.

Autism Speaks Rose Bowl Walk

Since Megan gave me permission to post on the site I have slacked off in writing. I will do better.

First we want to thank everyone who donated to team "We Love Josh". To say the Lindsay was successful in forming her team and raising money for Autism Speaks does not due justice to what the final result. Lindsay more than double her fund raising goal, team building and to top it all off gave Megan the best birthday present ever. Here are a couple of picture I stole from the participants blog sites.

This is Megan's Dad, Ken. Notice the button on his hat, it has a picture of Josh. Overachiever Lindsay made individual buttons for everyone that walked!

Even the Empire was out supporting Autism Speaks. I imagine there was also Han and Luke were nearby to protect the galaxy.

Here is the group, going across the back is "Elizabeth" aka Berlin, Ryan, Ken, and Brandon; along the front is team president Lindsay, Deborah, and Chelsea + child.

Once again thanks to everyone who helped Lindsay, and more importantly Autism Speaks.

Yes?

Can you imagine not being able to say "yes" or "no" in response to a question? These are two very useful words that up until now Josh has not been able to use successfully. According to my What to Expect The Toddler Years book, children usually learn to say "no" as one of their first words. They also learn to say "no" before they learn to say "yes" because it is easier to enunciate the word "no" than the word "yes." Apparently it is also easier to shake the head back and forth for no than to move the head up and down for yes. Until recently, Josh has done neither. At one point he had over 50 words, none of them being "no" or "yes." So how did he express "no" or "yes?" If we asked him if he wanted something, he would repeat the name of the thing he wanted with a hopeful tone in his voice. The common response to the question, "Do you want a cookie?" was the word cookie said with a big smile and often a laugh. Negative responses often included crying or whining or even ignoring. If we asked Josh if he was ready to come inside after playing, he would respond by crying and wailing.

To teach Josh to say "yes" and "no" his teachers would ask him nonsense questions. For example they would ask him if his teddy bear was a diaper? He would just stare at them in confusion, look at them like they were crazy or ignore them. We also tried asking him if he wanted something he didn't like in order to elicit a negative response. We would offer him a raisin and he would respond by ignoring us or turning his head. Recently things have begun to click into place. His teacher will push him in a swing and then ask if he wants to stop. She models the word "no," which he repeats and then she starts pushing him again. He has been responding more and more often without the prompt. We ask him if he wants to swing and we get an enthusiastic "yes!" Well, it's more like "wes!" because the "y" is hard for him to say. The other day when I picked him up from school, I asked him if he wanted to go get some fries. To my surprise and delight, instead of hearing an enthusiastic "fries?!" in response I was met with a cheery "okay!" I was so pleased and you can be assured that Josh got as many french fries as his little heart desired for lunch,

Beautiful Surprises

Every now and then, I have a moment where I realize just how far we have come in this journey with Josh. Yesterday he was playing quietly by himself (and not bugging Jane who was nearby) when I heard him say, "Want Mommy fix it." Apparently one of the ramps on his toy garage had come loose and Jane was playing with it. All of a sudden it struck me that when we first had Josh evaluated a little over a year ago, he wasn't putting two words together. Now this sentence had just come out of his mouth. He was able to convey what he wanted and I was able to fix it. This was HUGE! I wish I could convey the amount of work that has gone into that sentence. Josh's teachers would get him to use two words by having him repeat phrases like "more crackers" or crackers, please" with something he wanted, like crackers or cookies. Food is a powerful motivator for Josh. (He's like his mom!). Sometimes he would cry and I would think, "Just give it to him!" When he got better at putting two words together, his teachers (and his parents) started demanding three words. like "more crackers please." This seems to be how these early intervention programs work. When a child masters something, it's on to the next thing. Now lest you think we are all cruel taskmasters, Josh gets lots of breaks. We only work on these things at certain times of the day and we always monitor his emotional state. If he seems too tired, or if he is sick, then we go easy on him. And if he gets really frustrated then we've worked out a system where he can show us what he wants.

Josh is really making great progress. Today he asked me, "Go to school today?" He loves school. When we get to his classroom he rushes in and starts playing, often forgetting to take off his coat. He can say all of his teachers' and classmates' names (that's 15 people!) and we are working on greeting each person by name when we first see them. Often autistic children won't wave as babies or say "Hi" and "Bye" when they get older. Josh is learning this skill at the same time as his little sister Jane. The other day I came home from a meeting. Josh popped his head out and said, "Hi Mommy!" I almost died of happiness. To greet me at the appropriate time and call me "mommy" which he didn't do until just before his 3rd birthday, well that was just incredible! He's always catching me off guard. The other day we were watching Sesame Street. He gleefully identified Cookie Monster when he came on screen. They are kindred spirits those two! But then Josh stunned me by saying "Letter of the Day." He knew the presence of Cookie Monster and Prairie Dawn onscreen meant it was time for the Letter of the Day. These things might seem very small and basic but there were dark moments when I worried they would never happen. That's one of the hardest and best parts of this autism thing. You learn to really appreciate every little milestone, things that come naturally to typically-developing children. There's a fair amount of heartbreak when your child can't do what most of his peers can, but when he achieves something he couldn't do before the feeling is tremendous!

First...then...

These are two powerful words. Jason and I first learned about them when we read Jenny McCarthy's book Louder Than Words. These words are a way of helping a kid understand sequence. For example, we say to Josh, "First eat your applesauce, then you can have a granola bar." or "First we have to put on shoes, then we can go outside." Often we simplify because autistic children have trouble with too much verbalization. We say, "First applesauce, then granola bar." It's a way of teaching Josh to wait for what he really wants, that you got to eat the healthy stuff before the sweet stuff. It's a good thing to know for adulthood too. "First you go to work, then you can have fun."

Today, Josh decided to adapt the "first, then" phrase. He has been harassing Jane a lot lately and as a consequence we have been putting him in the corner for a time out. Unfortunately, I was in the middle of changing both kids' diapers when the harassment started again. I was almost done changing Jane but Josh was still quite a stinky fellow. He took the toy that was distracting Jane during her change and she started to cry. I told him to give the toy back to which he responded, "Go to corner," He was not telling me to go to the corner but was telling himself what to do because he knew he was in trouble. He does this often when he knows he's done something wrong. He says. "Hurt Jane!" after slapping her on the head. This is him echoing what he hears often, "Don't hurt Jane." Either the kid is ignoring or not hearing the "Don't" part. Now we say "Be gentle." In response to Josh's latest toy swiping and self-inflicted corner punishment, I said, "No, we are not going to the corner, we have to change your diaper!" His response was, "Then, corner!" He seemed quite pleased with himself and rather excited to go to the corner. I'm glad he is starting to understand "first, then" but I think I am going to have to come up with a new consequence for bugging Jane. The corner clearly is not working.

I have arrived!

For those of you who do not know, I am engineer, ;), so I have trouble with what most people call "English." One of my deciding criteria in studying engineering was so that I would not have to "write." Well, that has not worked out so well. After submitting three featured papers and my portfolio I have been accepted as co-editor of Megan's awesome blog.

I feel lucky to have such an amazing wife and two wonderful children, whom have been previously described. We are also blessed to have great teachers for Josh, as well as school administrators and coordinators.

I thought I would share a quick story. As we were getting a second opinion about Josh's autism diagnosis the doctor we asked what the future would hold for Josh. Paraphrasing what the doctor said "Do you know any engineers? He will be like that." Engineers are obviously not known for their social behavior, emotional displays, or what some people refer to as "feelings" which is also some of the generalization of autistic children. Needless to say Josh and I have a lot in common, which I like and look forward to future joint projects. I only hope if he becomes an engineer he introduces himself as an engineer.

Welcome

I finally relented and agreed to let my husband, Jason contribute to this blog. I'm not very good about sharing. He now considers himself an "editor" and I'm sure there will be no living with him now, but he is going through this too and I'm sure he has some great stuff to say. And I happen to love him so he gets his way and I'm glad to have him.

Team We Love Josh

My awesome sister Lindsay is doing something really cool for my son Joshua. As a birthday gift to me this year, she is going to participate in a Walk for Autism on April 25 in the Los Angeles area. The walk is to raise money for Autism Speaks, a reputable charity that engages in "awareness, fundraising, science, and advocacy efforts." My brother Brandon and his cute wife Chelsea have joined Lindsay's team and have dubbed themselves "Team We Love Josh." Several people have also made donations. I couldn't be more delighted or grateful. This truly means more to me than they will ever know. And they will be helping other children with autism! If you would like to help out, you can go to Lindsay's blog or to the team page for "Team We Love Josh."

Affection

A common misconception about autistic children is that they don't feel the same affection or attachment as typically-developing children do. This has never been the case with Joshua nor with any of the other autistic children we know. Josh's special education teacher suggested the other day that perhaps in some cases the opposite of the stereotype is true, that autistic children, with their heightened sensitivities, feel "too much." I don't know for certain but tonight after family prayer, Jason and I were giving the kids kisses before taking them upstairs to bed. Jason usually carries Josh up while I carry Jane. As we headed upstairs, Josh turned to Jason and planted a spontaneous kiss on his cheek. I could tell Jason was pleased by the way he said, "Thanks, Pal!" happily to Josh. I was delighted and little sad that I wasn't the one getting the "free" kiss. I ask Josh for kisses all day long which for the most part he obliges me with. I rejoice in Joshua's capacity for pure love and affection. Truly he is a gift from God.

Autism Awareness Month

April is Autism Awareness Month and April 2, 2009 is World Autism Awareness Day. To learn more about this disorder which more children worldwide will be diagnosed with this year than diabetes, cancer, and AIDS combined, or to find out what you can do to help, click on this link.

Babies R Us

I'm not the biggest fan of our local Babies R Us. I think they are trying to achieve the dubious honor of being the store with the worst customer service in the Capital District. I only go there sometimes because they have some cute clothes and a few random baby things that I can't find anywhere else. But they are winning some points with me their fundraising campaign for Autism Awareness Month (April). Toys R Us and Babies R Us have teamed up with Autism Speaks to raise money "to help solve the autism puzzle" and "to educate families and community members about the disorder." You can go to this site to learn more. I was in Babies R Us the other day looking for Easter clothes and was able to make a donation just by adding it on to my purchase total. So easy! I loved it! The website in the link above also has a list of toys that "speak" to children with autism and a gorgeous slide show of photos of autistic children paired with quotes from their parents. The slide show is so moving and hopeful. I encourage you to check it out if you get a moment.

Pete Townshend

I was just listening to Pete Townshend's "Let My Love Open the Door" while trying to come up with a title for my new blog. I've been pondering doing an "autism blog" as a way to get out information about autism advocacy efforts. But I also wanted a place to share some of the joys of raising an autistic child. I think a great metaphor for autism is a locked room. In Jennie McCarthy's book Louder Than Words, she talks about a friend who told her about having a limited time to pull her son through the window of autism, so he could join us in our world. I agree with some aspects of this notion but I've altered it to fit my views. Here's how I see it.

Sometimes my beautiful boy is locked in a room and I can't always reach him. But every now and then a window or better yet a door opens and I see the real Joshua, joyful and happy and full of light. I do not think it was an accident that his first word and first baby sign was "light." Can I pull him out of the room? Should I pull him out? I don't know for certain but I am going to use all the love I have to give and all the help God will give to me in order to help him.

And the Pete Townshend song is perfect because I've seen so many parents of autistic children using the power of their love to open those doors and windows: from a dear friend who started this journey before me and has been my invaluable guide, to the moms in my support group who channel their grief and love towards helping their children. This blog is dedicated to everyone who uses love to open the locked doors, whatever they may be, in their lives.